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3Addiction is a major social problem that affects not only the person with these problems but also causes harm to family members, for example, by domestic violence, abuse, and neglect. They are often called Affected Family Members (AFMs). While the adverse effects of parental substance use on children have been well-researched, effects on young adults have been studied less extensively. Therefore, in this dissertation, we analyze these effects among a sample of students who were followed for three years using quantitative and longitudinal qualitative methods.
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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: 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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Disclosures of sibling sexual behavior (SSB) usually affect all family members but there remains, however, a paucity in studies on therapeutical family interventions and how they can initiate changes in families. This study was designed to explore relational impacts of SSB disclosures, goals for therapy and interventions that helped a family initiate the recovery process after a SSB disclosure. A single case study design was used to analyze a family's long-term therapy process. Data on this N = 1 study comprised 18 interviews with involved therapists, five interviews with involved family members, therapy files, and notes on family sessions. Data was analyzed using a thematic approach. Relational traumas were experienced in broken relationships, relationships under pressure and damaged trust between family members. Therapy goals were to (1) recreate family's safety, (2) help the family process the SSB consequences and (3) restore trust and search for relationship healing. Appropriate interventions to target the goals included individual-centered psycho trauma treatment as well as interventions for the parents, the involved siblings, and the uninvolved siblings, followed by sessions between the involved siblings and with the whole family. Therapy outcomes were found in reduced individual trauma symptoms, a recreated sense of family safety, the start of relational trauma processing, and newfound forms of sibling/family relationships. This study provides a unique and comprehensive insight into a family's healing process after SSB disclosures from the perspectives of both professionals and family members. The effective interventions identified in this study may provide tools for therapists working with these families. This study may also offer greater insights into both the abusive and mutual types of SSB.
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The aim of this cross-sectional study is (1) to describe the socio-demographic characteristics of students with relatives with problematic substance use and to examine differences between students with and without relatives with problematic substance use in (2) health, (3) substance use and (4) study success. We analyzed these differences in bivariate analyses between 881 (15.6%) students in a Dutch university population with relatives with problematic substance use (referred to as Affected Family Members (AFMs) and 4,781 students without such relatives. AFMs reported poorer health and used more substances, especially cannabis, than did non-AFM students and drank more often alone than did their peers. AFMs had more frequently study delay and missed class more often because of drug use. AFMs with more than one relative with problematic substance use had poorer health than AFMs with only one relative. Effect sizes were small to moderate. Health and educational professionals should provide support to deal with difficult life circumstances, for example, trauma-informed care programs.
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Background: Family members of relatives with addiction (often referred to as Affected Family Members [AFMs]) experience potentially traumatic events, including psychological violence, physical violence, sexual violence, death, or accidents of relatives due to addiction. Objective: This study explores the development of stress in young adult AFMs over several years and why their stress increases or decreases. Method: A three-year longitudinal qualitative study. Four rounds of in-depth, semi-structured individual interviews were conducted. Twenty-four students drew a stress graph. They scored their stress levels from the first interview in 2019/2020 to the last two years later on a 10-point scale and explained why their stress increased or decreased. Interpretative Phenomenological Analysis was applied. Results: We distinguished four patterns of stress: stress remained stable (high or low; n = 3), stress increased over time (n = 5), stress decreased over time (n = 10), and stress had erratic highs and lows (n = 6). For most participants, stress related to their relatives’ addiction problems was high and highly dynamic. We found factors associated with the direct stress of life with relatives with addiction problems, such as recovery, relapse, aggression, incidents, and accidents. We also found indirect effects, such as trust, intimacy issues, stressors related to education, work, coping strategies, and support. AFMs’ stress persisted often over the long term, even after a relative died or contact was broken. Conclusions: Identifying reasons for stress increase or decrease might help AFMs, healthcare professionals, and educational professionals who want to support AFMs in managing their stress.
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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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Treatment decisions for older cancer patients can be complex due to comorbidities, varying levels of functional ability, and the significant impact that cancer treatments may have on quality of life and life expectancy. In this context, shared decision-making (SDM) is recommended to ensure that treatment plans align with patient’s values and preferences. However, it might be challenging to include older patients in SDM due to cognitive and sensory decline or a preference for more paternalistic guidance, making family involvement a vital source of support. Additionally, as healthcare systems shift toward patient- and family-centered care amidst rising costs and workforce shortages, families are expected to take on a greater role as informal caregivers. This added responsibility can place a significant burden on family members of older patients with cancer. Despite widespread acknowledgment of their essential caregiver role, there remains limited understanding of how family members are involved during treatment discussions and decision-making processes.
This thesis aimed to provide a deeper understanding of family involvement in treatment decision-making processes for older cancer patients. The focus was on the roles that healthcare professionals, patients, and family members played in triadic decision-making and how their collective contributions, shaped by family dynamics, impacted the process.
Chapter 2 explores the results of a scoping review conducted to examine the factors influencing family involvement in treatment decision-making for older cancer patients. A comprehensive literature search into four databases resulted in 27 relevant studies: 16 quantitative, nine qualitative, and two mixed-method studies. The analysis identified five key categories of factors that influence family involvement: 1) patient characteristics, 2) family member characteristics, 3) family system characteristics, 4) physician’s role and 5) cultural influences. These factors impact the extent of family control in decision-making; treatment choices; and how patients and family members experience the treatment decision processes which is related to decisional agreement, levels of stress and coping strategies for both patients and family members.
Patient characteristics: Family involvement in the decision making process is related to patient characteristics such as socio-demographic status, health status, cognitive abilities and psychological characteristics. Older, female patients and those with partners are more likely to prefer shared decision-making with family, while those with higher education and income often exhibit more dominance in treatment decisions. Patients in advanced cancer stages or with cognitive decline experience more family control. Those with healthy emotional functioning view family as a source of coping support.
Family member characteristics: Family involvement in decision-making is influenced family member’s characteristics being the caregiver's role, relationship with the patient, and various socio-demographic and psychological factors. Primary caregivers, especially those dedicating many hours, are more involved, and there is higher decisional agreement with partners than with adult children. However, family members experiencing depressive feelings or difficulty accepting the patient’s condition more often report family disagreements, lower confidence in caregiving decisions, and a stronger preference for life-prolonging treatments.
Family system characteristics: Communication patterns, support levels, interdependence, and past conflicts, shape how family members are involved in decision-making. Open discussions about treatment options can help patients cope, and higher levels of support increase family involvement; however, some patients avoid burdening their families, while some family members try to protect the patient. Families with a history of conflict often show higher levels of decisional agreement.
Physician’s role: Family involvement in decision-making increases when physicians actively engage family members and encourage discussions about treatment options. This approach enhances the decision-making experience for both patients and families, highlighting the need to support family members as they adapt to their evolving role, particularly in end-of-life care for older cancer patients.
Cultural influences: Family involvement in decision-making for older cancer patients varies by cultural orientation, with collectivist societies viewing illness as a family matter. Differences also exist within countries, influenced by ethnicity, language, and urban or rural settings.
The review highlights the complex interplay of these factors, rooted primarily in family system dynamics. It underscores the need for developing evidence-based strategies to better support family involvement in treatment decision-making for older cancer patients, as part of a comprehensive approach to person-centered care.
The study presented in Chapter 3 aimed to explore how surgeons and nurses perceive the involvement of adult children in treatment decisions for older cancer patients and to identify practical strategies for fostering positive family participation in clinical settings. Semi-structured interviews were conducted with 13 oncology surgeons and 13 nurses from both university and general hospitals, with data analyzed using qualitative content analysis based on thematic analysis.
The findings indicated that the involvement of adult children in decision-making tends to increase as patients and their partners become more frail. While this involvement can support more informed decisions, it also presents challenges. Surgeons and nurses recognized the proactive role of adult children, noting that they are often more willing than partners to ask questions and provide information about the patient’s health. Adult children help facilitate discussions by considering aspects of a patient's life beyond the medical perspective. However, challenges arise when patients withhold information in front of their children, when adult children dominate conversations, or when they advocate for life-prolonging treatments that differ from the patient’s preferences.
Health professionals identified six strategies to promote positive family involvement in decision-making: “focus on the patient,” “acknowledge different perspectives,” “involve adult children,” “get to know the family system,” “check that the patient and family members understand the information,” and “stimulate communication and deliberation with adult children.”
This study underscores the significance of family involvement in shared decision-making and provides actionable strategies for health professionals to enhance family participation in the treatment of older cancer patients.
Chapter 4 presents an observational study aimed at investigating the involvement of family members, patients, and physicians in triadic decision-making processes within geriatric oncology practice. The Observer Patient Involvement Scale for Multiple Chronic Conditions (OPTIONMCC) was chosen to measure SDM behaviour based on the SDM model for older patients with Multiple Chronical Conditions Within the OPTIONMCC, physicians' behaviour was assessed using a Likert scale ranging from 0 (not observed) to 4 (executed to a high standard), while the behaviours of patients and family members were scored on a scale from 0 (no or minimum participation) to 2 (active participation, including answering and asking questions).
Data from 25 consultations involving 10 physicians, 25 older patients, and 30 family members revealed that patients participated more actively in shared decision-making (SDM) than family members (mean scores 0.96 vs 0.61). Physicians demonstrated low to moderate SDM skills (mean score 1.81), and higher physician scores correlated with greater participation from both patients and family members. The level of family involvement in the SDM process varied greatly, with some family members being completely uninvolved while others were highly engaged. Through qualitative analysis of the consultation transcripts, it was found that family 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. Although physicians were generally responsive to family input, they rarely actively involved them in the SDM process.
The findings suggest a need for strategies to enhance family involvement in SDM models for older cancer patients, as well as additional training for healthcare professionals in managing family dynamics.
In Chapter 5, a quantitative observational study examines the associations between physicians' shared decision-making (SDM) behavior and the participation of patients and family members in decision-making during medical consultations with older patientsUsing an observational design, 95 recorded consultations involving patients over 65, their family members, and medical specialists in a Dutch hospital were analyzed. The OPTIONMCC tool was used to evaluate physicians' SDM behavior and the involvement levels of patients and family members. Results showed a strong positive correlation between physicians' SDM behavior and participation from both patients and family members (0.68 and 0.64, respectively, p<.01). Family members were more actively involved in SDM for patients aged 80 and older. Despite the significant differences in the level of family involvement, we did not find significant differences in the physicians behaviour or the patients’ level of involvement in SDM.
The findings suggest that physicians play a key role in facilitating SDM, alongside proactive contributions from both patients and family members. While this study does not establish causality, it provides insights into the dynamics of triadic SDM and offers suggestions for refining the OPTIONMCC. Further research is recommended to explore the mutual influences of participants in triadic SDM.
Chapter 6 presents a qualitative interview study exploring the experiences and perspectives of family members involved in decision-making for older cancer patients in geriatric oncology, with a focus on how their involvement affects roles and family dynamics. In-depth interviews were conducted with 16 family members of 11 cancer patients aged 70 and older in the Netherlands. Thematic analysis was used to analyze the data. Four key themes emerged from the study. The first theme, "Roles," revealed that family members often provide practical and informational support and sometimes act as advocates for the patient. The second theme, "Family Values and Beliefs," highlighted the importance of unconditional and reciprocal support within families, emphasizing the core value of caring for one another. The third theme, "Family Dynamics," included managing tasks, keeping everyone informed, coping with uncertainty, and dealing with differing opinions and emotions. Finally, the theme "Dilemmas" described the challenges family members face, such as balancing their own opinions with the patient’s preferences, managing trust in medical professionals, and weighing caregiving responsibilities against personal needs. The findings provide valuable insights into the complex roles family members assume during medical consultations and decision-making. These roles are shaped by family values and dynamics, which can significantly influence decision outcomes. The study underscores the importance of healthcare professionals supporting family caregivers in navigating these challenges while respecting patient autonomy.
Chapter 7 provides a summary and discussion of the results. In current oncology practice for older patients, healthcare professionals tend to respond respectfully to family members, rather than actively engaging them in discussions. Family members, in turn, provide practical, informational and emotional support, and sometimes taking on an advocacy role for the patient, before, after and during medical consultations. Family involvement is generally seen as helpful, as it can support patient autonomy while also benefiting the family members themselves by enhancing their understanding and emotional well-being. However, this involvement can also present challenges, especially when conflicting views or family dynamics complicate the process and there is a risk of caregiver burden. Healthcare professionals have the potential to influence deliberation processes between family members and enhance informed decision-making by using family-inclusive strategies in SDM processes, optimizing triadic decision-making dynamics. Achieving this requires a paradigm shift, the education of professionals, and supporting both patients and family members in their roles, while fostering open conversations and understanding family dynamics.
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In our Guest Editorial “The COVID-19 Pandemic: A Family Affair,” which was published in the Journal of Family Nursing by members of the FAMily Health in Europe–Research in Nursing (FAME-RN) group (Luttik et al., 2020), we highlighted the impact on nurses and families.
The pandemic was at its beginning, and we described the situation of patients and families and the need for family nursing. Furthermore, we addressed the effect on the mental health of nurses and other health care professionals, due to the increasing workload they needed to manage. In this Guest Editorial, we discuss the impact of the COVID-19 on families during and post pandemic.
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Background and aim Addiction problems also affect the lives of family members. This study aims to examine: (1) young adult family members’ experiences with informal and professional support in coping with the impact of relatives’ addiction problems and (2) how these experiences evolve over time. Method A three-year longitudinal qualitative study. Four rounds of in-depth, semi-structured individual interviews were conducted. Thirty students aged 18–30 years, participated in the study at baseline. 93% participated in at least two interviews, and 80% participated three or four times. The Stress-Strain-Information-Coping-Support model was used, and Directed Content Analysis was applied. Findings Five major themes were extracted from the data: (1) Informal support; (2) Educational support; (3) Healthcare support; (4) Resilience factors; and (5) Developments over time. Informal and educational support were more often described as effective than healthcare support, although the number of participants who sought healthcare support increased over time. Effective elements of support included being able to discuss their experiences with people listening without judgment or unsolicited advice and having long-term relationships of trust with people from the social environment and professionals. Participants were mainly treated with Cognitive Behavioral Therapy (CBT) and Eye Movement Desensitization and Reprocessing (EMDR). Learning how to distinguish between accurate and inaccurate thoughts, especially about themselves, was considered effective. Body-oriented therapy was remarkably absent. Finding effective healthcare support was often a long and winding road through various therapies and therapists. Participants were not attracted to peer group interventions but needed advice on how to deal with their relatives. They also needed recognition by their relatives for harm done. This recognition was seldom given. Conclusions It is recommended to train educational and healthcare professionals to recognize the support needs of young people with relatives with addiction problems, to help them cope, or to refer them adequately. We also suggest broadening the scope of professional support offered to AFMs, including body-oriented and cultural interventions.
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